Support Systems for
Children with Autism
Krysta Jones
10/4/2011
As of 2011, the Autism Speaks Organization provided on its website the following:
“Today, it is estimated that one in every 110 children is diagnosed with autism, making it more
common than childhood cancer, juvenile diabetes and pediatric AIDS combined.”1 Growing
more rapidly as the years go by, autism is a disorder that has no definite cure. Children are given
different medications and different diagnoses, but whom and what is out there to really help them
succeed in everyday life? Throughout the state of North Carolina, there are several organizations
helping people with disabilities. Support systems for children with autism are not rare, but they
are certainly varied. From personal feelings to professional dispositions, those who are a part of
these support systems know the world of autism very closely.
As one of those people who experiences autism almost every day, I wanted to know more
about the support systems available for children with autism and how they operate. I have seen
advertisements for Autism Speaks Incorporated, and I have walked in the annual Triangle Walk
Run for Autism, but I have never asked anyone what really goes on “behind the scenes” of those
support systems who help children and their families. I wanted to know more about how these
support systems are implemented, who implements them, and how/if government affects them. I
wanted diversified answers, so I completed the following in order to receive them: e-mailed
questions to mother of child with severe autism, e-mailed questions to supervisor at Turning
Point Services, Inc., asked for a Parent Handbook from the Mariposa School for Children with
Autism, and read an interview done with Temple Grandin, PhD.
Hope Colen is a mother of four from Cary, NC. Of her four children, the second-born is a
twelve-year-old boy with severe autism. From her perspective, support systems can be
understood by the role of a parent/family member. Thaddeus Lentz is a supervisor for Turning
Point Services, Inc. located in Wake County. This organization is dedicated to helping people
1
“What is Autism? Autism Speaks,” Accessed September 27, 2011. http://www.autismspeaks.org/what-autism
with disabilities meet specific goals, both academically and socially. From Mr. Lentz’s
standpoint, we are able to understand the role of someone who works directly for the support
system. The Mariposa School for Children with Autism provided the “Parent Handbook” from
the 2007-2008 school year, which is a primary document for teachers, parents, and students. The
handbook serves to display the support system of a school focused specifically on autism, its
wishes, and its concerns. In combining the three previously described viewpoints, along with the
words of a person with autism, an effort to discover how support systems for children with
autism are applied, can be shared.
When asking or finding out about how support systems are implemented, each resource
had its own “spin” on the question. Mrs. Colen says that there is not one system that helps her
son with autism, but she explains that several components go into providing care for him: the
school system, Medicare, ACI, Turning Point Services (TPS), and length of hours per week. By
using TPS, Mrs. Colen says it allows her family to switch agencies if they wish.2 Mr. Lentz
explains that TPS has to wait for families to contact their Local Management Entity (LME) and
then apply for services. After some families wait for years, their circumstances are then analyzed
to determine how much funding, or hours, they are able to receive through TPS.3 The Mariposa
School for Autism “Parent Handbook” explains that several services are implemented daily but
in “a single integrated setting.” The Mariposa School makes sure that their programs are
designed individualistically for all students, and they ensure that data will be provided to
measure progress for students.4 In discussing what Dr. Temple Grandin believes should make up
a support system for autism, she explains that early intervention is necessary if those around a
2
Hope Colen, e-mail message to author, September 30, 2011
Thaddeus Lentz, e-mail message to author, October 3, 2011
4
Mariposa School for Children with Autism, “Parent Handbook 2007-2008 School Year” (paper presented at parent
orientation, July, 2007)
3
child with autism want that child to fully succeed. Dr. Grandin also tells that individualism is
necessary, and she includes the need of those around a child with autism to examine that child’s
functioning levels to ensure proper language training.5
From measuring data to language training, all of the support systems available have to
operate somehow. The people that run these systems and ensure that they are effectively working
are worth mentioning. Mrs. Colen says that the case worker provided for her son is very helpful
and helps determine if there are any issues within his programs. Mrs. Colen is very adamant
about hiring her own people, as opposed to having TPS do it for her. Mrs. Colen says, “Families
that are not able to advocate for themselves and use these services only as a starting point are at a
huge disadvantage.”6 Mr. Lentz explains that families have case managers who then hire
habilitation technicians (HTs) to actually provide the services to the children with autism. These
HTs are overlooked by their supervisors, who make sure appropriate work is being put into
place. 7 In the Mariposa handbook, it explains that students at the school have one-one-one
instruction every day. The role of the instructor is to provide help in educational, behavioral,
linguistic, social and motor dysfunctional areas. Each day, these instructors must record and
organize data regarding the student’s progress.4 In her interview, Dr. Grandin tells that people
who work with children with autism do not succeed if they only focus on social skills. In order to
be successful in implanting a support system for a child with autism, those in charge must also
focus on career development. 5
5
“Autism First-Hand: An Expert Interview with Temple Grandin, PhD,” last modified February 3, 2005,
http://www.medscape.org/viewarticle/498153
6
Hope Colen, e-mail message to author, September 30, 2011
7
Thaddeus Lentz, e-mail message to author, October 3, 2011
Those in charge of these support systems, like Mr. Lentz, have to get their funding from
somewhere. Does the government assist, control, or challenge these support systems? Mrs. Colen
answers this question by stating that even though the government pays the bills that provide
these support systems, there is always uncertainty. She also explains that because the
government provides funding, these services are decreasing the quality of people they hire due to
competitive wages.6 Mr. Lentz describes the relationship between TPS and the government as
“constantly fighting for every budgetary dollar” and tells that the support system has had to have
cut backs over the past several years.7 With an examination of responses given by Mrs. Colen
and Mr. Lentz, it can be concluded that government aid can sometimes prevent children with
autism from getting the quality of service they deserve. While it is nice that government aid
“pays the bills,” the uncertainty of support can provide families with even more stress.
In terms of government aid at the Mariposa School for Children with Autism, it does not
exist. Because the school is a private institution, the children’s families must pay for the services
being provided. There is an enrollment fee and a one month security deposit for new families and
each family must make monthly payments due on the first day of each month. There is also a
“Late Pick Up Fee” which states that “Parents agree to pay a charge of $10.00 for every five
minutes that the student is left at the School after the contracted program hours.”8 Although the
handbook does not provide any extra information regarding government aid, the Mariposa
website does explain that the State of North Carolina Autism Early Intervention Project helps
8
Mariposa School for Children with Autism, “Parent Handbook 2007-2008 School Year” (paper presented at parent
orientation, July, 2007)
give partial funding for ten students. 9 In her interview, Dr. Temple Grandin is not asked about
and does not specifically mention the role of government aid, but she does discuss the
seriousness of controlled medications. Laws and regulations created by the state are what control
the decisions of doctors of these children with autism, and Dr. Grandin states, “Another thing
that's a real problem is educating general practitioners not to tell parents that the kid's going to
outgrow it when they bring in a 2 year old showing autistic symptoms.” By describing the
“black-box” warning of medications and the possibility of suicide, Dr. Grandin advocates for
controlling medicine prescriptions. 10
It is important to recognize the diverse perspectives taken on by the sources provided in
this quest. There is a unified theme of child-centeredness that pertains to each person and
document. Mrs. Colen believes strongly that families of children with autism should advocate for
highly qualified professionals, in order to receive the best instruction possible. Mr. Lentz works
closely with case managers and technicians to ensure that children with autism are getting what
they deserve. The Mariposa School for Children with Autism creates an environment that not
only involves students and instructors but also includes active parent involvement. Lastly, Dr.
Temple Grandin shares her experiences and knowledge as a person with autism to benefit others
who may come upon it.
Overall, there are two conclusions that I can personally make from the information
gained in this research. First, children with autism cannot be overlooked in terms of their
conditions. Each case is different and must be treated with careful and proactive attention.
Second, finances for children with autism are not easy to obtain. Although government aid is
9
“Frequently Asked Questions| The Mariposa School for Children with Autism,” last accessed October 1, 2011,
http://www.mariposaschool.org/faq
10
“Autism First-Hand: An Expert Interview with Temple Grandin, PhD,” last modified February 3, 2005,
http://www.medscape.org/viewarticle/498153
provided a lot of the time, the reliance of that aid is sometimes unsteady. Homecare services,
medical appointments, and prescriptions have to add up to large amounts of money. In
conclusion, support systems for children with autism seem to be quite successful, but it should be
a priority of the state government to increase the help given to families of those with disabilities.